10 Responses to “From Seizure to Surgery: first-person account of what it's like to have a brain tumor”

It’s tremendous fun . I had a benign meningioma removed almost three months ago. The daily headaches and migraines are gone, but both of my ears have been infected since the operation and the bug refuses to die.

It’s popular to ridicule the Canadian health care system, but I’ll say this: the interval from diagnosis to surgery was less than three months, and the staff at Kingston General Hospital were fantastic.

I emphatically agree. My husband had a Glioblastoma in his teen years. Once they realized what caused the seizures and what they were dealing with, the doctors at the Ottawa General were extremely efficient.

After two days spent grieving my increasingly addled mind, I decided to stop my meds for a day. I’d clear my system, then start again on a lower dose…..That night, when I closed my eyes to go to sleep, the seizures started coming.

She should have been warned that you never stop anticonvulsant medication suddenly. The last time I stopped Tegretol the rule I followed was (IIRC) Start on 200+200,four days on 200+100, four days on 100+100, four days on 0+100, then zero. Thats milligrams of tegretol. 200+200 means morning+night. You ease in the brakes lest you go over the handlebars and land with a sickening grunch.

It’s worth mentioning that the same advice applies to alcoholics. A long term alcoholic’s nervous system is depressed by the booze and copes by becoming more and more sensitive to stimulus. If you suddenly remove that depressant, your ultra-sensitive system is overwhelmed like holding a fog horn up to a microphone, and you seize.

Whenever I hear of someone trying to quit alcohol cold turkey I tell them to see a doctor and ask if anticonvulsants are needed. It’s an extra step, but it’s better than lying on the floor in a clonic seizure until you’re found.

Thanks for posting this, Xeni. The writing is excellent, the experience terrifying. I’ve never witnessed anyone having a grand mal seizure but after reading that, I now have an idea of what they might be going through and can not only help, but sympathize.

Like CPR, everyone should have some basic training in how to assist someone with a seizure. A while ago, meaning a long, long time ago, I was Director of Ed at an adult school. A prospective student had a gran mal in the lobby of the school and I was the only person able to comprehend what was occurring. There was no time to think, I just responded.
I think the most terrifying part of Jess’s saga was her awareness during the seizure(s)…”seeing and feeling” but without the power to wrest control and regain some semblance of control.
I wish you well Jess and Dave and may most of your future days be calm and lived without fear.